Spinal Tap (no...not the movie, unfortunately)

[buzbyjlc10]

Originally Posted by Marianjela

My son has spinal taps every month where they test for leukemia in his spine and inject chemo. They give him Versed and Fentanyl beforehand. One is for pain, and the other is to help him forget he's had the procedure done. He lays on the bed and nurses curl him into a tight ball and the doctor extracts a sample of spinal fluid before injecting the chemotherapy. He has to lie still for an hour after the procedure. Sometimes he experiences soreness in his back afterward, but nothing that Tylenol hasnt taken care of. And not enough to stop him from playing with his action figures! Most of the time he isnt even aware that he had it done, aside from the gauze and tape they place on his back.

I'm not trying to be nosy and if I am just tell me you'd rather not talk about it, I won't be offended lol, but I just noticed that your location is PA and am curious if your son is treated via Hershey Medical Center? I went to Penn State and was a huge part of Dance Marathon which annually raises millions of dollars for the Four Diamonds Fund out of Hershey Medical Center - the fund is for all of the expenses related to families with children who have cancer and are treated there...

Like I said, if it's too personal just tell me to butt out haha

 

[ssmith0385]

Originally Posted by valanhb

So I went to a neurologist yesterday because there were some abnormalities on the MRI I got (that kinda ended up being a sinus infection). Anyway, my brain would apparently be in the jar labeled A.B. Normal from Young Frankenstein.

She said the signs point to a good possibility of MS, but she wants to run more tests before she gives any kind of diagnosis. I started doing some research on MS online and decided not to do that anymore - too scary!

They list ALL of the possible symptoms for the worst case scenario, even though I know that this disease can be on a wide range from quite mild to severe.

The big test she wants to do is a lumbar puncture a.k.a. spinal tap. So I got that scheduled for May 30 (on a Friday so I can lay flat on my back for 24 hours and have the weekend to recover). I did read the entry on Wikipedia, which I know isn't a medical site but I just wanted general info.

I thought I would ask here - who has had a spinal tap? What was it like? How long did they keep you after the procedure?

I figure if it's scary I have 2 weeks to deal with it and go in feeling OK about it.

I've also had a friend who had one. He didnt' listen to them when they said not to move much for at least 48 hours. He got a lumbar puncture headache, and he swears it was the worst pain of his life. He was throwing up at our Senior prom from pain. (Yep, that's why he didn't follow orders) That was years ago, though. Just be sure to follow their orders and everything will be ok!

 

[valanhb]

I really want to thank everyone who has replied so far about their knowledge and experiences. It's really helping me.

Any more thoughts and experiences are definitely welcome!

This is a pretty scary time for me, and of course it's gotten me thinking of every little unexplained thing my body has done ever.

I'm trying not to get too wrapped up in thinking about the worst case, because my doctor even said that this isn't an "urgent" situation that requires treatment to start immediately.

 

[marianjela]

Originally Posted by BuzbyJLC10

I'm not trying to be nosy and if I am just tell me you'd rather not talk about it, I won't be offended lol, but I just noticed that your location is PA and am curious if your son is treated via Hershey Medical Center? I went to Penn State and was a huge part of Dance Marathon which annually raises millions of dollars for the Four Diamonds Fund out of Hershey Medical Center - the fund is for all of the expenses related to families with children who have cancer and are treated there...

Like I said, if it's too personal just tell me to butt out haha

I dont mind the questions. Josh is treated at Children's Hospital in Pittsburgh, which is 2-1/2 hours from our home, but they are very nice there. Once when our van broke down we tried to have Josh treated at the cancer center here in Erie, but they dont deal with kids at all. Made me wonder what would happen if a family couldnt make that 130 mile one-way trip on a regular basis.

I can definitely appreciate the fund-raisers you've done. I never realized the expenses someone incurs when they are inpatient. Aside from the actual medical bills, there is food for the parent, parking, laundry, blah, blah, blah. You just never think about the little things. Even a free toothbrush or deodorant stick is appreciated when you're so far away from home! LOL

Anyway, thanks for participating in the Dance Marathon - I am sure you made someone's stay that much easier!

PS - I'm a Nittany Lion too! Behrend Campus.

 

[momofmany]

Originally Posted by valanhb

Anyway, my brain would apparently be in the jar labeled A.B. Normal from Young Frankenstein.

Keep giggling girl! It will help you get thru the procedure!! If this were me, I would look at it this way: yes, the spinal tap will be uncomfortable but afterwards, you'll have what you need to know on how to go about treating your condition. My neighbor has had MS for many years now. If that is what you have, there are all kinds of new drugs available to manage it.

Sending you to get thru the procedure and even more that it isn't MS.

And hey - we can put your Franken-brain in a jar next to my Franken-thumb!

 

[buzbyjlc10]

Originally Posted by Marianjela

Anyway, thanks for participating in the Dance Marathon - I am sure you made someone's stay that much easier!

PS - I'm a Nittany Lion too! Behrend Campus.

No Problem! THON was the best experience of my entire life! I love letting those kids just be kids for a weekend

And yay for a fellow lion! Let's Go State! (I'm class of 07 - after 5 years lol)

Ok, I think I'm done hijacking this thread

 

[tari]

Heidi, believe me, I know exactly what you're going through. I've been going through it myself since February, and it's no fun. I'm with ya in the A.B. Normal jar. They found mine when they did a CT scan because I was having headaches after I tripped over Forest and fell down the stairs.

I had a spinal tap in March. Mine was not a normal procedure, so I won't go into details. But the thing is, it went about as bad as it can possibly go and I got through it. Yes, it hurts if they hit a nerve, but it's a temporary pain. The worst of it is over as soon as they're done. The procedure should only take about 10 minutes. I was mildly sore for a couple days afterward. I didn't have the headaches. Just follow their instructions and you'll be fine. You're a strong person and you can get through it.

I was given a diagnosis of MS. It's a terrifying possibility. I went through an absolute rollercoaster of emotions. I had just about accepted it when the results of one last test came in that changed their mind. They ran a few other tests and it turned out not to be MS at all. So, my best advice is to hang in there and try your best not to react to anything until all the results are in.

If it turns out to be MS, keep in mind that it's a really unpredictable disease. Everybody experiences it differently. I work with a doctor who's a national expert on the disease and he told me about doing autopsies on patients who's brains were riddled with it, but they never knew it because they hadn't had a single symptom. Most people do well if they get onto therapy early.

Sending you loads of vibes, Heidi.